It was coming up to our summer holiday so we all decided to go
away as planned and try to put everything behind us which was
not an easy thing to do. Four days after returning from our holiday
we went back to Birmingham Womens Hospital for an Amniocentesis
test., this was to check for Downs
Syndrome. One was a mild form where life expectancy is quite
good after the operation or there was a more serious form called
During the scan we also found out that the baby's hernia was
larger than expected and also it was thought to contain the baby's
bladder and kidneys. After the test I had to rest for 4 days as
the Amniocentesis carries a 1% chance of miscarriage. We were
told that they could do a quick chromosome count which both Simon
and I agreed to, this would give us a result in two days while
we were waiting for the Amnio test results. We were overjoyed
when we got the results that the test was negative and there were
no abnormal cells present. At least now we knew the baby's problem
I phoned Simon and told him that we were expecting a little
boy and we both decided on the name Daniel-James. A few weeks
later we were back at the hospital for another appointment with
the professor and the heart specialist to check his heart was
working correctly. Unfortunately the heart specialist couldn't
make this appointment but the professor did a detailed scan to
find that the heart had slightly twisted on its axis. This was
normal for his condition as there was no internal organs inside
to keep the heart in the right place but other than that the heart
was looking very strong which was a good sign.
Two weeks later we went back to the hospital to see the heart
specialist, just to confirm that what the professor had said was
correct. The specialist said that when Daniel-James was born he
would do an ultra-sound scan on his heart to check for any small
holes which can't be detected on the scan at the moment. We have
been back and forth to the hospital for Anti-Natal and routine
scans to make sure that the blood supply is going to the umbilical
cord. Everything has been fine and Daniel-James is growing according
to his due date.
We made an appointment to see the surgeon who would be treating
Daniel-James when he is born. He explained to us that until Daniel
is born he does not know which procedure he will be carry out
as each baby with this type of hernia is different.
He explained that there are different methods of treatment for
this condition. One of the ways could be to operate to put the
organs back into the body but because Daniel's hernia is higher
up, he thinks that there is a possibility of causing Daniel breathing
problems. As his organs are put back inside the stomach cavity,
his lungs are pushed back into the correct position which could
restrict his lung function.
Another method is put what is know as a compression bandage over
the Exomphalos/wound. Over time the internal organs would slowly
go back into his body, this would then be followed up with an
operation to close the wound. If there is not enough skin to strecht
over the wound he would take a skin graft from his thigh or bottom
or use a gortex mesh to cover the wound
to stop infection. He he then told us that the procedure could
take anything up to 6 months before Daniel would be discharged
from the children's Hospita, but treatment could continue for
quite a few years as there is a tidy up operation to deal with
the scar. We came out of the hospital feeling very positive knowing
that there are many different options that could be followed to
The next anti-natal appointment I had, I saw a poster on the
wall from Carlton Television asking for any expectant mothers
who were expecting babys with problems to get in touch. The hospital
contacted Susan Jones for further information. I phoned Susan
when I got home and explained to her about Daniel's condition,
she was very interested and we arranged a meeting so I could show
her the scan pictures and explain in more detail.
Susan and I met up and she decided that it would be worth following
Daniel's "story". We were pleased with this as we felt
it would be very helpful to raise awareness of his condition.
We continued go the hospital for check-ups to make sure that Daniel
was growing and to check on his hernia.
On Wednesday 6th February 2002 I was admitted in the Birmingham
Womens Hospital to start preparations for the section the next
day. I was starting to feel very nervous that in less than 24
hours time I would see my son for the first time, a moment that
I had waited for, for 9 months. I was absolutely terrified as
I didn't now what he would look like with all of his insides on
the outside but I was so excited I couldn't sleep all night. The
morning came and Simon and our families arrived along with Susan
and the film crew.
Tthe nurse came and said it's time now Sally-Anne, I was scared
as I knew getting Daniel out safely was crucial. Up to this moment
I had hid many of my feelings about today, how scared I was, what
would be the outcome, and most importantly would my son survive
this. As we were on our way to the operating theatre I said to
the nurse and Susan I want to tell my mom it's time. I walked
into the cafe saw my mum and said "it's time", I have
never ever cried so much, it was 9 months of tension flooding
out of the both of us. I will never forget those precious words
my mum said to me and I will never be able to thank her enough
for giving me the strength to cope with the rest of the day.
I went into the theatre and the doctors preformed the spinal
so I could be awake when my son was born. After the theatre was
set up Simon came in and I started to laugh but deep down I knew
that he was another big part of my strength, he kept me laughing
through those bad time.
When Daniel was born it took him about a minute to cry and then
I heard the sound that I had waited so long for, Daniel crying,
I knew then that he was alive. They took Daniel down to neo-natal,
and as they brought him past I caught my first glimpse of him
and i could see his tiny little face and lots of black hair. I
was so proud to see him breathing by himself and knew that he
really was my little soldier.
Soon afterwards Daniel was ready to be transferred to the Childrens
Hospital so a nurse took me down to see my son. When I saw him,
all I could see was my little boy lying there, I held his little
hand and as much as I wanted to take him out of the incubator
and love him I couldn't . The doctor said after 10 minutes let's
go and they ran with my little baby, it felt like he was just
taken away but at lest 10 minutes was better than nothing at all.
I knew this had to happen but you can never be prepared to be
seperated from your first child within a matter of hours.
The day after Daniel was born a vist had been organised with
the Womens Hospital for me to go and see Daniel and spend a few
hours with him. I was so excited I got out of bed, got ready and
waited . When I arrived they took me straight to Daniel, and I
felt so proud to see my little Daniel fighting. The nurse asked
if I wanted to hold him, I jumped at the chance, my first cuddle,
I was so proud I just sat there and loved him, and kept telling
him how much I loved him and how proud I was of him
Sunday came and I don't think I have ever packed my clothes so
quickly. Nothing was going to stop me from being with my son.
Later that everning Daniel had a setback with his treatment. The
doctor decided to use a pressure bandage to try and slowly compress
his insides back in. This had been in progress since his birth
and progress had been made, but slowly. They tried putting the
bandage on tighter in the morning and by early evening his heart
beat and oxygen supply became very high which could have caused
a cardiac arrest, so they decided to ease the pressure. This was
very difficult for me because I had never seen him like this before.
Daniels operation lasted about three hours. It was very successful
and the surgeon was able to get everything back inside and close
the skin. Simon and I went to I.T.U. He was was sedated but alive
and well, It was so lovely to see him lying there, nothing on
the outside, he looked like a normal little boy.
It took Daniel six days to be weaned off the ventilator. Near
the end of this time he began to breath by himself. Unfortunately
the skin covering his wound broke down and revealed the gortex
patch. After Daniel came of I.T.U he made good progress and within
a week he was having a small amounts of milk and a contineuos
feed during the night through a NGT
tube. After 2 weeks we could take him out of the hospital and
go for a walk around Birmingham with him in his pram. This is
when we realy knew he was out of danger.
Daniel was in hospital for a total of five weeks. It was brilliant
on the day we came home. Daniel came out of hospital still on
his continuous feed so the last week before we left I had to learn
to pass the tube up this nose and to use the pump. He also had
to have a district nurse visit him at home every other day to
change the dressing on his tummy as well as going to the hospital
once a week for his doctor to check that everything was healing
OK. It was hard saying goodbye to all the staff at the hospital
as we had built a a good relationship with them.
When we got home it was so nice to be able to have a night togethrt,
just Simon and I and Daniel, we had finally got back to the real
world. We had hospital visits every week and at one of these his
doctor suggested that the gortex patch could be removed .
Daniel's tummy has now completely healed and he has only one
more operation to have and that is when he is 6 years old to repair
the hernia . He is doing everything like any normal four and a
half month old baby. He is smiling, laughing, and I am now introducing
mixed feeding to him. I know that I would never wish this upon
my worst enemy but we have all come through it and are stronger
for it. Daniel will now be able to grow up like a normal little
boy and we will always cherish every moment with him but nothing
will ever take away the memories of those first five weeks.